Yesterday I took the first step in what should be a long, stressful battle towards filing for Social Security Disability Income. I called an advocate who deals with SSDI all of the time to help eliminate some of the stress. I’m meeting with her tomorrow so we can start the ball rolling.
After I got off the phone with her I had a complete breakdown. The one thing I don’t need in my life right now is more stress. My two biggest stressors are my health and money. And the day is coming when my Unemployment Compensation is going to run out.
Then it occurred to me that I’ve had to fight for just about every thing in my life. Nothing has been easy and it’s been that way since I was a child. I’m just one of those people who has had to live with very hard circumstances all of my life.
Now here I am fighting for my life…and I’m tired. Really, I’m tired of fighting. I’m tired of every thing being so damn hard.
It’s a fact that cancer is going to kill me. That’s how I am going to die. I will have to suffer. Yet, someone behind a desk at Social Security won’t give a shit. To them I’ll just be another file to look at, to find reason to deny.
Some of you may be thinking, “Well why can’t she go to work?” I have tumors in my abdomen that cause me so much pain I can’t sit up for more than two hours at a time nor do I have the energy to sit up more than two hours at a time. I take pain killers that make me so drowsy that I sleep 16 to 18 hours a day.
And I’m still in pain.
You know those bad days I told you about? This is one of them. Carry on…
{ 35 comments… read them below or add one }
Anyone who’s wondering why you can’t go to work just arrived to the blog and didn’t actually read anything here.
Just remember that you know what a bad day is because you know what a good day is. That’s how I get through them, anyway.
Poppys last blog post..I cannot think of anything clever to say about guitars.
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Anyone who would dare wonder why you can’t/aren’t working is just an ass with no comprehension of what you are going through. Just remember, the ones that do know why care about you. To be honest, I don’t think you SHOULD be working even if you felt well enough to do so. You need to concentrate all your energies on your health.
{{hugs}}
Lucys last blog post..The Holidays Are *Almost* Here
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((HUGS)) and prayers…hang in there Lisa!
Tugs last blog post..My political post
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((hugs))
I wish I had something better though.
catnips last blog post..holiday $pending
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((hugs))
Finns last blog post..It’s Up To You, New York, New York
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First of all, I’m sending you a giant hug because you’re having a bad day.
Second… now, now… you don’t knowwww that cancer is what you are going to die from. So don’t give up fighting and as tiresome as it is to fight please don’t tire of fighting. That is when cancer gets to win. And you might think you know that’s what’s going to kill you, but when you get hit by a bus, don’t come to me all ghosty like because all I’m going to say is “Told you so.”
If I could take every bit of your pain right now, I would. In a heartbeat.
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I will keep you in my thoughts and prayers. And just so you’re prepared, it is almost a guarantee that you will be denied twice for benefits and will have to appeal, but if you don’t give up, the third time is usually the charm.
derfinas last blog post..Cover yer arse, Gussie
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Lisa;
On this difficult day, I hold you close to my heart. Your blog is wonderful and I admire that you can write on good days and bad. Keep writing; I’ll keep reading.
Blessings,
kate
Kates last blog post..Three Fortune Cookies
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Where’s a heart icon when you need one, huh? I need one so that I can send it to you.
((( hugs )))
I hope this SSDI process goes smoothly.
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((((hugs))))
Karen Sugarpantss last blog post..My Big Dirty Hole
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Thoughts and prayers coming your way, Lisa!
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Hope tomorrow’s a good one!
Avitables last blog post..Hypocrisy pisses me off
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Lisa, I wish there was something I could say that would make it a better day for you.
And I agree with those who said that anyone who can’t understand why you would be unable to work is either an idiot or new to this blog.
Sharons last blog post..A few of my favorite things
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Jesus, Mary and Joseph, anybody thinking “why doesn’t she just work?” is a complete asshead. Working is the last thing you need to do. You’re already doing enough work just remaining functional.
These days are going to happen. I read when things are bright, I read when things are bleak. I always read, even if I do not comment.
Chin up, my dear. Tomorrow is another day. True story.
Olives.
Cryss last blog post..IT’S COLD ALREADY IN CHICAGO
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First of all, here is a huge *HUG* to help you at the end of this bad day.
Secondly, any jerk who is questioning why you CANNOT work, should live a day in your shoes. For crying out loud, our society is losing the compassion, and respect that people used to have for one another. It is all about the end financial means of the big corporation, and, not the emotional needs of the person. I am sad, that someone actually questioned, why you cannot work.
I will be hoping that Friday’s chemo goes well, and hope that it attacks those tumors.
And, yes, I am pathetically behind on my blog- haven’t posted in over a month. I think I am due.
Christines last blog post..This year we get to experience “Team Teaching”
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Just came from an ovca conference and one of the presenters was from social security. He said he’d never seen an ovca survivor denied. I also know a lot of ovca survivors that have applied and all got it approved.
Do you have the chance to talk to other survivors?
What chemo are you on now? Have you considered a trial?
Patsy
ovca survivor
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When you wake up tomorrow morning, it will be a new day. And with that day comes hugs from your girls, a funny joke from Dude trying to be funny, and another day you stayed strong.
Matties last blog post..I Have No Lashes
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Lisa, try your best to stay at peace. Money, in the long run, isn’t going to matter as much as it now seems to. When I get back in my feet financially, I send you more. And if you feel unwell and you don’t want to deal with the social security people - can you ask a friend or Dude to assist you with it so it doesn’t trigger so much stress for you? Last, not to be a cornball or anything, ask God for help - not just help with coping, but go for the whole ball of wax and ask for healing. God can do anything - I truly believe that and I pray for you every day - not for you to get a little break or buy you a little time. I pray every day for your total recovery and a long, happy life. In the mean time, I reiterate, try to be at peace. This is your path; it ain’t fair and it sucks like no other kind of suckage I know, but if you let it destroy your peace of mind, you are letting the terrorists win. Flip them the bird and watch some trash tv and snuggle up with your kids and your Dude. Isn’t that the best thing ever, anyway? And you can still have that -so have it. ((((hugs))))
Ninas last blog post..The pain of chickens
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Hang in there, Lisa. You can do this. And whoever wonders why you aren’t/can’t working right now, send them this way and I will kick their asses. Don’t let them get to you.
*hugs*
Sodapops last blog post..Nervous Nelly
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Just a note to let you know something I learned when my ex husband had to file for SSDI. It is very important that your doctor completely explain on the form that he/she must fill out just how sick you really. He/she must make it in plain English.. just the way you wrote it out..about the tumors, the pain killers, etc…
I fully believe that without the very detailed letter from my ex’s doctor he would not have received it the first time he applied.
Another note.. IF you are not approved the first time?? Try again.. most always people are accepted the second time.
And also…the money will accrue from the day that you apply. The first time. When you are approved even if it takes a little time..you will receive a back payment from the day you applied. (hope that made sense)
SSDI saved our lives financially. We were eating from the food pantry at the church and so in debt that we did not see a way out. Even though I was working full time.
Anyway..I am rambling.. hang tough. I am thinking of you and wishing you a better day tomorrow..and the next day and the next.
((HUGS)))
Sandis last blog post..Americans!
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I agree with the comment above–”IF” you get rejected, keep applying. I just can’t imagine that you would be rejected.
Hang in there. I’ll keep reading.
misfithausfraus last blog post..Out of the Mouth of Ella
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Lisa, I hope I can alleviate some of your anxiety over the SSDI application and dealing with the SS office. As you know, I’ve been on SSDI for 4 years now. The application IS daunting, and I also had help filling it out, but if you can get ALL your paperwork and all of your datebooks since you first were diagnosed with Cancer1 together, it will be much easier. The problem that people have with filling out the application is that they are lacking paperwork that has dates of hospitalizations and treatments, and the full names of all your doctors. Having that information at hand, building a timeline with the dates and the hospital names/doctor names will make the form MUCH easier to deal with. I promise!
Second, once you have filled out and mailed in the form, it does take a while to get your SSDI, BUT if your UI has ended, they will give you emergency funds through the SSI program. The interesting thing about SSDI is that they will backdate your checks to the very first time you applied, so even if you’re waiting for your first payment, you’ll get a big back-dated check.
Next, your children are also eligible to receive benefits on your check. BUT, you have to put their names on your bank account, as they will direct deposit your money monthly and will not send the kids checks if you’re not using DD with everyone’s name on the account.
Lastly, I’ve had NOTHING but excellent service from the SS office up here. I don’t know if you’re going to deal directly with Baltimore since you’re close, or if you have a local office, but the people I’ve dealt with have been WONDERFUL. It is nothing like the surly state employees at the UI office. These people take pride in their jobs, they believe they are helping people and honestly, they are friendly and polite even when you’re a nervous wreck.
I was so sure that I was going to be rejected because I’d heard such nightmares that I had already lined up an attorney to help with my appeal. But I got my SSDI right away, no problems at all. This is because I worked HARD on the paperwork and I did it with help from someone experienced. Plus, I had, like you, a real physical disability that was tangible. The people that get rejected most often have mental illness, which are much harder to quantify.
One thing you MUST know is that you CANNOT get Medicare right away once you are on SSDI. There is a waiting period of a couple of years. It’s RIDICULOUS, but there you go. So, you need to apply for your state’s medicaid program, but like me, you’re probably not eligible. So, you need to apply for free care through the hospitals you are using. If you are accepted for free care, the hospitals will pay for all care including medications. I KNOW that Sloane Kettering has free care. I can’t tell you if your local cancer center does, but you need to ask.
Don’t be afraid. Once you get beyond the fact that the form is bigger than most Harry Potter novels, you’ll get down to it and get it done. I found that doing it in a couple of sessions instead of all at once was most helpful. And don’t forget to send it REGISTERED mail, return receipt. I learned that the hard way. Oh, and DO NOT use the online form. Do it in pen and ink. The online forms ‘get lost’. Yeah, I had to fill out that damn form 3 separate times. Learn from my mistakes!
Good luck, and if you need any help, just ask!
margalits last blog post..WFMW: Rewards for Teens
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It was a very wise thing to do, to get an advocate. They’ll be able to be tenacious for you on those days you don’t feel like bringing your “A” game.
As to the ass-hats who wonder why you aren’t working? Holy crap, people. Grab a freakin’ clue.
I wish you strength, delicious sleep, and a productive meeting tomorrow.
Hugs.
Baroness von Bloggenschterns last blog post..Wordless Wordsmith Wednesday
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Lisa, Please try not to stress out. Remember, you’ve got tons of people thinking of you & praying for you. I’m on SSDI, too, and I was going to write about my situation, but from what I can see, everybody’s experience is different. I do know of a few people who got approved the 1st time, I have no doubt you will & I seriously mean that. Although I’ve heard it’s 5 months before you get a check, I know 1 person that actually got her 1st check w/in 2 months. It was just cuz whoever she worked with knew how to pull the right strings. That said, it is a wonderful thing you’re working with an advocate because if anyone knows the ropes, she should. They will see the seriousness & urgency in your situation.
janes last blog post..it does
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It looks like you’ve gotten some good info here so far. I do have to add that the note about having your children’s names on the bank account could be a state requirement, as I do not have to do that in my state.
However, I have a few other tips that may help.
1. If you’re already on a form of public aid it seems to help you get qualified in fewer attempts–so if there’s a ghost of a chance you’re eligible for Medicaid, apply. It could make a huge difference in how fast you’re qualified. And yes, I know how huge the suck factor is in making this application–I just had to do it myself so I could afford my pain meds, because the cost went up beyond what I can afford and still eat. Even worse, it was at the office my mom worked in for so many years that they all still remember little me and now have the adult me applying–I don’t think any of us saw that coming, but it’s plain that I need the help and no one’s said anything negative about it. Yet. And I don’t think anyone who knows Mom will dare do so–she’s not known for being a timid critter…
2. A second seemingly innocuous question that’s asked on the application is, “Have you ever been fired due to your disability?” It’s not as minor as it seems, tossed in toward the end of the application (which is where it was when I applied and qualified in ONE attempt. This may have been changed as well) but it’s another of the biggies that can qualify you faster if you’re able to answer “yes” in any way, shape or form.
3. The advocate is a stellar move on your part–and I hope she’s as huge a help as it sounds like she’ll be.
4. Make SURE your doc states clearly in his/her portion of the application that you are NOT allowed to work, no matter what the level of physical or mental stress is involved, since you’re far too weak to do so. What your doctors say about your ability to work is yet another biggie in the “How many of these damned novels do I have to write?” formula that Social Security uses to determine eligibility. Ditto on Dude’s section of the form–he needs to be as specific as possible about how your condition affects all aspects of his relationship with you–all the way from “Who does the shopping” to “Can she still be intimate and if so is it more/less/the same as before the disability?”
I know you can’t fight today. Maybe you won’t be ready to fight again tomorrow or the day after.
But the day after that, when you pick up a pen and that pile of paper, remember that this is another baseball bat to use for kicking cancer’s ass–and even tho some of those questions are highly embarrassing, write a book of your own if necessary even on the most embarrassing ones. Don’t turn your embarrassment (am I spelling that word right? probably not) into a weapon it can use on you, ok? Don’t just be honest as we know you will–be as blunt as necessary to get your condition across to the bureaucrat who will eventually be reading that tome you’re about to write.
I just bought a pretty scarlet red candle (the color of strength) and I have a fuckton of cinnamon incense (the scent of money and bringing it to you) so they’ll be lit as I say prayers for you now. When you get your fight back, start kicking and don’t stop til you get the form letter that details your SSDI award.
PandoraWildes last blog post..Geek.Kon=Blast!
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Aw, cripes, hon. I’ve been away from blogland for far too long. I owe you a phone call. Just been caught up in my own little world. Definitely find a good advocate for the SS thing. I pray it goes well.
Love you.
Karls last blog post..The Rest of My Birthday Presents
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No advice on the SSDI ~ I’ve been denied twice so far ~ but I think it’s great that you’ve got an advocate to help you.
Huge {{{hugs}}} and so many prayers going up for you ~ I hope tomorrow is a better day.
Kims last blog post..Blog Challenge Sunday: Public Scrutiny
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It looks like some people here have already given some great advice. I would say one of the most importanat things besides all your documentation is what the doctor says specifically. The SSDI workers don’t want or I think sometimes don’t have the knowledge to wade through all that paper work, the doctors statement is very important.
Also the personal forms you and your husband fill out. Don’t be embarrassed by the personal questions and try to seem more capable. Some of the questions seem stupid, but if you can’t brush your teeth and put on your shoes some days , SAY SO.
Don’t think to yourself, “Well, I could if I really wanted to so I should answer yes.” It sure sounds to me like some days you are feeling really bad and really just can’t, so don’t be afraid to admit it.
annies last blog post..You Wanna See Cute?
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Hey Lisa, I read the comment you posted over at my place, and I hope you have time to read my response. I haven’t been reading your blog as regularly as I want — but you have my attention again. I hope you have a better day tomorrow and wanted to thank you for your honesty about what you’re going through. Your forthrightness represents an ideal that truly inspires me.
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Lisa, Hopefully whomever you are working with knows this, but so long as your application is labeled “TERI” (TERM-inal I-llness), SSDI is legally mandated to expedite the review of your claim. My sister-in-law, who has Stage IV breast cancer, had her first check in hand in less than 8 weeks. The trick is to actually use the work “terminal,” NOT “incurable” or any other euphemism. And it’s not enough to simply say you are dying or that you could die before they issue a decision. I suspect they hear things like that from people everyday, true or not. It also helps if you look as bad as you feel when you make the application. Don’t worry about what others think. No one in their right mind thinks that you should be working.
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Sorry for the double post.
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It’s truly nobody’s business if you work, or why you don’t work…
And if they make it their business - fuck them.
Just want you to know I’m thinking about you.
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Lisa- Just remember that Government paperwork is utterly fucking frustrating and that these people don’t often use their own judgement to get things done. Patsy is correct…get all your ducks in a row and you’ll be fine.
As the Navy SEALs in training say- The only easy day was yesterday. (In my formerly Army trained mind, when shit sucks I like to say this to myself- Readily will I display the intestinal fortitude required to fight on the (life) objective and complete the mission, though I be the lone survivor.
Sometimes in my day, I feel the “lone” can get to me. We all do what we have to and I’m with ya on catching the breaks. THis will make you feel like laughing… So, we’re trying to sell a house, got four kids, and the hub was unemployed for 15 months. We stay afloat, he gets a job. Spends our retirement to live in Shitcago, and then rents a place we can’t afford since we had a mortgage already ( he missed the kids, school was starting, no common sense)He doesn’t tell me that we needed an extra 100k so he can BE a partner!! The firm he works for has now sent him an email and said if he can’t get the loan by 20Oct., he’s fired!! How’s that? Ya laughing yet? To top it all off, with our 90k in credit debt from a business gone bad(he got screwed)…we just got a notice of some credit fraud!!!
Sigh. Take a deep breath and know it is going to get better! It HAS to at some point!!
Listen to some Jack Johnson…Better Together….
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Cancer sucks balls, and just pisses me off to know end. Please know I think of you every time I look at my bracelet (or when I bang my arm against something, lol). You are in my prayers, happy thoughts, and all that good stuff.
Ashley Hasts last blog post..We’re having another….brat!
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I have no useful advice, but it looks like you’ve gotten plenty of that here. I just wanted to add some hugs….
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